An update on the Tecfidera (Biogen). This will be week four (I think, I loose track of time.) It is going well. NO side-effects, and actually don’t REALLY have to take it with food anymore, although I DO try as it provides a GREAT reminder for me to EAT (I have a tendency to forget that minor detail as I manage a life with 3 kids, boyfriend and his 2 kids, two households, a full time job, blogging and the world’s GREATEST dog.) I really DO think it is “helping.” I have said that the reason for choosing to start this medication is that although my most recent MRI showed NO signs of progression, NO new lesions and NO active lesions (http://www.bbhwithms.com/the-results-are-in-first-mri-scan-for-ms-in-three-years/) I had NOT been on any disease modifying drug (DMD) for three years, and now there is something else out there to try, I would be STUPID not to give it a whirl. I DID NOT expect it (Tecfidera – Biogen) to do anything for what I already have, what I live with day to day. Meaning, I didn’t think it would do anything for the pain that is there EVERY day, or the “wonky” legs, when they decide to simply NOT listen to my brain. Nor the peeing issues (have you noticed… I don’t think I have written a single post without mentioning the PEE THING…worried you all are going to begin to thing I have a PEE obsession!:)
I honestly think that it IS helping with some of THIS (ok, NOT the PEE one) but the others. It seems like I am having more and more BETTER days, and THAT BETTER, is BETTER than past BETTERS. Totally realize that is a completely fucked up sentence, but found it to be so funny, couldn’t avoid leaving it. What I am trying to say is that there ARE improvements, that seem to be sticking around. Rather than just ONE day, they seem to be around a bit more. Yesterday afternoon was HORRIBLE, AWFUL, and DOWNRIGHT UNBEARABLE. Per usual, there is nothing that I can credit it to, it just hit. I had a WONDERFUL morning with Shawn, running errands and returning the loaned car from an AMAZING friend. All was right, pain was at the lower levels I have been experiencing, fatigue was non-exisitent. It was a great morning; and then during the drive home…
WHAM-BAM-THANK YOU MAM!
What brings it on? WHY!!! FUCK!!!!!
That is all I have to say when this happens. BUT as I was laying in bed, for an afternoon nap, to try and make it better, a thought struck me. I could see an advantage to this happening. Feeling THAT bad, so suddenly helped me see/remember how GOOD I have been feeling, it allowed me to have a clear comparison. I experience the sneak attack flair-ups, that SLOWLY enter my life, and each day, I wonder, is this a flair, or just another bad day? The symptoms SLOWLY get worse and worse, but not enough each day to notice the difference, until is SO overwhelming and so damn SHITTY that I usually end up breaking down with Shawn, crying in frustration and pain; NOT wanting to go back on the steroids, but feeling like I can’t possibly put up with another day. Because I bear with it, day after day, continuing on “Martyr Meg,” doing it all, smiling and laughing, these breakdowns ALWAYS come as a complete and utter shock to Shawn and everyone else. Did it JUST happen? Did you wake up and feel this way? I then have to explain that it didn’t JUST happen, that is has BEEN happening for a long time, I just didn’t say anything. And THAT gets me in “trouble.” Shawn is furious that again I have hidden it, not been open about it. I work on getting better about that. I REALLY do, because NOW, I have someone that actually CARES and will listen, and HELP. I KNOW that I have always had family and friends that would do that for me in a heart beat, BUT…there is always something; they live faraway AND they have their own lives that have chaos and ups and downs and that makes it difficult for me to ask; to impose upon their lives. Having someone that is truly my best friend, that is there; connected to me and EVERYTHING that I do and feel, is something that I have never had, and it is AMAZING! It helps!
SO, with this SUDDEN attack of all the shitty things, it made me see that something HAS been better. This morning, after a good night of sleep, I got up and was back to the NEW better! The pain and “bad legs” were gone and I am up – cleaning, washing the car and working in the yard. I am going to choose to credit that to the Tecfidera (Biogen)! We will see if it again lasts, or I will find myself once again needing that afternoon rest. It was ONE day, in about three weeks, which is a LOT better than the before, when it was 3-4 days in a week, that the pain would return after a good morning and I would yet again, have those well known feelings of “can I make it through, and do all that I need to do and make it to bedtime?” We will see…fingers crossed!!!
And if does continue, I might just find myself crafting a Thank-You letter to Biogen!